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    Old 12-18-2013, 06:48 PM   #1
    simoncat1
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    Als

    My sister-in-law has ALS, cannot walk, speak, is choking more often. She has a motorized wheelchair and speaks thru a device called Maestro. She is at her home, with her husband. Difficult, she will not agree to LTC. Her neurologist offered her feeding tube, she typed, no. So neurologist said if you choke, then you will choke and you can die. She said OK, what can I do for her??

     
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    WhistleDixie (12-19-2013)
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    Old 12-18-2013, 08:36 PM   #2
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    Re: Als

    You have to respect her wishes=( I am so sorry for her suffering and for those loved ones who "watch" her suffer. My heart goes out to your family.

     
    Old 12-19-2013, 06:30 AM   #3
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    Re: Als

    Quote:
    Originally Posted by WhistleDixie View Post
    You have to respect her wishes=( I am so sorry for her suffering and for those loved ones who "watch" her suffer. My heart goes out to your family.
    Thank u so much for yr hugs, need it, I seem to be ther rock in this situation with my sister-in-law, she did tell me she watched a movie bout ALS and doesn't want to be at "Her" house when she is like that. How can I explain the her, that her "Wishes" have to be told, and written down, like DNR, etc., if she chokes to deth, or does she want CPR, its just too awful, and this rock here is slowly being chipped away everytime I see the changes in her. Thank u for answering.

     
    Old 12-19-2013, 09:45 AM   #4
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    Re: Als

    Hello simoncat1...I understand, as I am expected to be the "rock" in my family. Please know that you can come here to express your feelings and feel "cloaked" in the support of those of us who care.

    As for your SIL, yes she must state her wishes (explicitly) in writing and have them legally witnessed, including the DNR (explicitly). Regarding her desire to not be "end stage" in her home, perhaps plan for in hospice care? My heart fills with sorrow for her, for you, for her husband. I grieve for you all. I must ask, though, what is her husband's roll in this? Is he your brother?

    Another thought is POA...Does she have one? I hold my mom's POA (she's 87). It is a tremendous responsibility for me (the youngest of 6). I know what it feels like to make the hard decisions and serve with "boots on the ground". Those boots have been re-soled many times=)

    I have never dealt with ALS, but have witnessed how devastating it is to several people throughout the years. HOPE is not a plan with this disease, so she must make a plan before she digresses beyond the ability to make her own decisions. Perhaps you can approach her from that perspective. You can transcribe her wishes specifically into print, so that she can sign and file with the appropriate entities.

    I'm here, though I'm certain that is little comfort to you.

    Last edited by WhistleDixie; 12-19-2013 at 09:50 AM. Reason: added thought

     
    Old 12-21-2013, 07:34 AM   #5
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    Unhappy Re: Als

    Quote:
    Originally Posted by WhistleDixie View Post
    Hello simoncat1...I understand, as I am expected to be the "rock" in my family. Please know that you can come here to express your feelings and feel "cloaked" in the support of those of us who care.

    As for your SIL, yes she must state her wishes (explicitly) in writing and have them legally witnessed, including the DNR (explicitly). Regarding her desire to not be "end stage" in her home, perhaps plan for in hospice care? My heart fills with sorrow for her, for you, for her husband. I grieve for you all. I must ask, though, what is her husband's roll in this? Is he your brother?

    Another thought is POA...Does she have one? I hold my mom's POA (she's 87). It is a tremendous responsibility for me (the youngest of 6). I know what it feels like to make the hard decisions and serve with "boots on the ground". Those boots have been re-soled many times=)

    I have never dealt with ALS, but have witnessed how devastating it is to several people throughout the years. HOPE is not a plan with this disease, so she must make a plan before she digresses beyond the ability to make her own decisions. Perhaps you can approach her from that perspective. You can transcribe her wishes specifically into print, so that she can sign and file with the appropriate entities.

    I'm here, though I'm certain that is little comfort to you.
    No thank u, it is good to know that there is someone out there, that I do not know personally that I can talk to about this, u know u have to somewhat cloak yr tru feelings when around the family, I hope I'm posting this rite. Um, now she has been givn a stack breather, to exercise her diaphragm. (so lets face it, she cannot breathe properly, she cannot eat (choking issues), refused feeding tube, cannot, walk, talk, barely move, is incontinent. Well, to me she is near the end stages of life. Her husband is my brother-in-law, my husband is her brother. But I love her like my sister. She has 2 personal sup[port workers come in 2 or 3 times a day, change her, toileting, make sure she eats, (without choking), 2 of them are fantastic, some r very bad. She is now developing skin breakdown, on buttocks area. I have the flu, and have had it 3 times in 2 mth., so When I feel like that I can't go over there, cause I can't risk giving her any type of bug, if she get pneumonia, shes a goner. She understand that's why I cant see her every day. We communicate thru e-mails every day. Sorry, her husband, well, he is totally at the end of his rope, so very depressed. He feels that she should be in LTC, for proper care till the end., but as social workers say, if she refuses, then we cannot even put her on a list. as it stand now, someone big, is coming over Mon, hope I'm well enuff to go over, to try to talk her into a 1 to 2 week respite, where she will stay in a LTC facility 24/7 to give husband that is going insane a break. He tries his best, but cannot deal with having her home 24/7, her neurologist said to him, she is progressing faster now, if she chokes and dies, well it doesn't matter if u r there or not. So go out, and live yr life. U see her husbanf for 1st year before she got to this stage did not ever go out of the house, only to the garage. Lord, u must think I am rambling on. OK, u said I must get her wishes, I have told her that explicitly, 6 mths ago, she gets a shuttered look about her, the only wish I got was she doesn't want sad music, and wants purple flowers at her funersl. sigh. I don't even know what to do any more to su[port them. I'm gladf yr out there, listening to me, cause I really, really need this. Thank u for listening.

     
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    Old 12-21-2013, 10:13 AM   #6
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    Re: Als

    simoncat...PLEASE feel FREE to come here to "air" your feelings with total anonymity. We are all here to support one another.

    Your SIL's long painful death is so heartbreaking, for her, her husband, your husband, you and all those who love her. Long after she has left this earth, you all will grapple with your feelings of loss and emptiness. I love her spirit..."no sad music and purple flowers". Take your cue from that in dealing with healthcare directives being "signed".

    She DOES need to be transferred to a Hospice Center. I disagree with the doctor who told her husband "to go out and live his life". I believe in the marriage vows we take. This is the "worse" of the "sickness". He needs to have been in therapy since her diagnosis, and especially now...so that he can see her through to "good-bye".

    There are no easy answers here, as you well know. I pray that you all have the support and comfort of a pastor and church family. I keep y'all in my heart and in my prayers. Remember...I'm here for you=)

     
    Old 12-21-2013, 10:32 AM   #7
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    Unhappy Re: Als

    Quote:
    Originally Posted by WhistleDixie View Post
    simoncat...PLEASE feel FREE to come here to "air" your feelings with total anonymity. We are all here to support one another.

    Your SIL's long painful death is so heartbreaking, for her, her husband, your husband, you and all those who love her. Long after she has left this earth, you all will grapple with your feelings of loss and emptiness. I love her spirit..."no sad music and purple flowers". Take your cue from that in dealing with healthcare directives being "signed".

    She DOES need to be transferred to a Hospice Center. I disagree with the doctor who told her husband "to go out and live his life". I believe in the marriage vows we take. This is the "worse" of the "sickness". He needs to have been in therapy since her diagnosis, and especially now...so that he can see her through to "good-bye".

    Thank u again, for responding. Her Power of Attorney is her husband. He will not go into therapy, as he already has depression from wayyy back and is under the care of a psychiatrist. Ya, I know, for richer, for poorer, in sickness and in health, I do believe in this as well as I am very spiritual, I think the one above is gibing me the strength to carry all of this. I did e-mail her this morning, re: her wishes, etc. DNR all of it I laayed it all out for her, bout legalities etc. I did tell her tho, I would only ask this once, if u want me to stop, then tell me so. She replied, I'm not there yet!!!
    But, u see, she is there now, I know the stages of this disease, and I know that she is progressing fast, (inside, so does she),m so I replied back to her, OK, I won't mention it again, unless u e-mail me about it. So there it is. Stuck, it mite come to the point, that she is totallt paralyzed, with a feeding tube, respirator, etc, just keeping her alive. We were hoping that she would agree to go to LT care before that stage, but it doesn't look that way, also, she could stay at that stage for yrars at home, and I don't feel it is fair for her husband as well, the downstairs livingroom/kitchen has been converted too hsp. room, hard, I'm making her Tuna tomato sauce as she likes that (we r Italian), so my hubby will take it over later, please keep wriying me, cause I'm almost at the end of my rope, thank u so much for caring, sorry bout my spelling today, very emotional today. Huggs to u.

    There are no easy answers here, as you well know. I pray that you all have the support and comfort of a pastor and church family. I keep y'all in my heart and in my prayers. Remember...I'm here for you=)

     
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    Old 12-21-2013, 12:50 PM   #8
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    Re: Als

    Simon...my heart aches for y'all...I was just typing a LONG post to you and LOST IT due to "website not responding". I despise technology working against me=( I will try again later, sweetie.

     
    Old 12-21-2013, 02:31 PM   #9
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    Re: Als

    Quote:
    Originally Posted by WhistleDixie View Post
    Simon...my heart aches for y'all...I was just typing a LONG post to you and LOST IT due to "website not responding". I despise technology working against me=( I will try again later, sweetie.
    Thank u, ya, I hate it when u have a long post, n sumthin happens to it, then u can't remember what the heck u wanted to say!!! I will wait for yr reply. U r the only one that is answering me. Thank u very much.

     
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    WhistleDixie (12-22-2013)
    Old 12-21-2013, 10:30 PM   #10
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    Re: Als

    Hello again Simon...Sorry for a post so late at night. I've had extensive problems with my posts throughout the last several days. They finally got so bad today, I had to run a lengthy scan looking for "viruses" and clean up. Perhaps now I can say what I was thinking earlier today.

    Basically I wanted to say that my heart literally aches for the love and compassion you have for your "sister" and yet you're basically forced to watch her die. I cried when you said you were making her favorite tuna/tomato dish today for her. Bless you kind and loving heart.

    I cannot imagine what y'all are going through with ALS. My experiences, though nothing to compare with what you're facing, have dealt with terminal illness in loved ones throughout my life. I've stood helpless as I could do nothing but place ice chips on my grandpa's tongue, and place cold compresses on the forehead of a lifetime friend, as they both died in agony.

    I wish for you and your family to reach an agreement to find a lovely, peaceful, caring place for your SIL to die with dignity. And, yes, she could possibly linger in this condition for a very long time. But I don't think she will. I think she IS there, but is in some sort of denial. Probably self-preservation as is often the case.

    All you can do at this point, simon, is love her and be there with her when you can. Your conversing through email is a good way to share your feelings without being face to face, which I'm sure is hard to do without crying.

    I weep for you. I do. Please let me know if I can help you in any way. I'm always checking in on the board, so post ANYTIME. Just being able to talk to someone can often help=)

     
    Old 12-22-2013, 09:43 AM   #11
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    Re: Als

    Thank u for being there, even tho u don't know me, or her, I see that we r both on the same page, that is what I needed to know, that someone out there that doesn't know us, can see clear headed, bout what I am thinking. This way I can feel at ease (somewhat), bout how I am feeling. No it is not easy, and I see that u have had yr share of heartache as well, and I am sorry for that as well. I have often wondered why we r put on this earth, well, now I know, I am known as the listener, and the person to take control when needed, and make order out of chaos. Yes, self preservation is exactly what it is, as per her request I looked all over for clinical trials for her. I did find out that her neurologist had referalls for ALS clinical trials, (I have my ways of finding out) and told her bout this. She felt cheated and robbed that the did not tell her bout this, but I did warn her that maybe they r accepting only so many patients, or so many people presenting with certain symptoms. She did confront her neurologist, and basically, he stated what I had told her. Another hope for her, lost. My heart broke for her. In the end I feel it will have to be my brother-in-laws, and their grown childrens decision, to get her into LTC., tho only problem is, the waiting list, is 3 to 9 mths. long, and if u put yr name down now, and by some fluke they find u a place, and she says no, well she goes to the bottom of list to wait again. It may be that she will stay at home, but I must check how my brother-in-law did the POA, if he included all medical issues. I do know that he still has a rescusitate notice on file. U see a while back, she was able to walk/shuffle with a walker, and able (Lord knows how) to get upstairs, to be. Our hearts were in our throats each step she took, 20 min. to go upstairs, Lordie, when I think back. Anyway, I got frantic call early 1 morning, that she fell (1 of many), but this time was different, she couldn't move and was crying, I said call 911, now, I'll be rite there, so rushed over, live 10 min. away, long story short, she dislocated her shoulder. Ended up in hsp. 2 weeks, then 3 mth stint for convalescence (sp), then I thout, go straight to LTC, we all did, she refused and went home. This is how I know how she is coded, she is not codded DNR, which, is horrible to say, but I think, that she should be coded DNR, and if and when let nature take its course. Well, here we r now, at this stage. I want to thank u so very much for listening, and giving me the strength to go on, as I am, and not feel that I was doing an injustice to her by asking bout any final wishes. Thank u again. Please reply, even if its just to say Hi, it's good to know there is someone out there. Thanx.

     
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    Old 12-22-2013, 01:06 PM   #12
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    Re: Als

    Hello sweetie...I won't LEAVE you...I promise. I am here for you. We can talk about what you're experiencing with your SIL, or we can distract ourselves with chatter, if you want. I, too ask the Lord why? I have to believe we are put on this earth for a reason. I once had an aunt who said she believed she was put here to suffer, and she thought I was too. Downer, huh? I've been (and continue to be) tested throughout my life, but my experience has provided a "testimony". I have a deep and abiding compassion for the elderly and the sick and less fortunate.

    My husband and I took my mom (in the nursing home) a new TV last night. We attempted to "rig" a way to keep her remote from being lost or stolen. It's all for naught, as her dementia is worsening. I asked my siblings to help with the cost, but they refused, as always. The "up" side is that she has a new TV, whether she can operate the remote or not. She has her Christmas tree that I always put up for her. And, as always...she ENJOYED her pint of Ben and Jerry's ice cream...as she complained about the changes I had made to her room=) No good deed goes unpunished.

    Just "chatter" to give your mind a break from your burdens...I AM HERE FOR YOU...I will check in often to chat with you. Please let me know how you're feeling and how things are going for you. How will your family "celebrate" Christmas under these sad circumstances?

     
    Old 12-27-2013, 02:02 PM   #13
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    Re: Als

    Hey simon...Nothing posted from you for a few days...Hope that means you're trying to enjoy some holiday time with family. Please let me know how things are going!

     
    Old 12-28-2013, 07:58 AM   #14
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    Re: Als

    Hi, again WhistleDixie, sorry, but believe it or not, I forgot my stupid password. lol lol, ya, I need a bit of humour, ya, thank u again, for checkin in on me. havn't seen my sister-in-law since before Christmas, due to fact that I have had the flu 3 times, and am now getting migraines. I cant take the chance of exposing her to anything, that could cause her to get pheumonia, since her immume system is compromised, do to the ALS.. I havn't talked to her husband yet, but I think that the bigwig, was comin over yesterday, to see about 1 or 2 wk, respite care for her, outside of the house, to give her husband a bit of a breather. Since, I havn't seen, her in a bit, I'm not sure how she is, or if she has progressed. Hopefully not.

    Well, I hope that yr mother enjoyed her new TV, lol. That was nice to hear that u did that for her, and ya, ur right, no good deed goes unpunished. hmmmmm.

    My sister-in-law and I still e-mail, but she is very slow in the typing now, but its OK, I wait, or we will have a brief chat on **, and ya, ur right also, I realize, that there IS NOTHING THAT I CAN DO, but to support her, cook for her etc, and just be there for her.

    Sad, she is a shadow of her former self, a fun loving, happy, loving life and everything in it, type of woman, and yup, I do miss that, but when she gets frustrated, I just tell her, u r not yr disease, u r not ALS, u r Angela, and regardless of this disease, u will always be Angela.

    It's all that I can do.

    Thank u again for listening to me, I really do appreciate it. Thank u.

    And Happy New Year!! next week of course.

     
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    Old 12-28-2013, 10:59 AM   #15
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    Re: Als

    Hey simon...sorry you're not feeling well...the flu can be terrible. I'm here, whenever you need to talk. Until then...take care and LOVE your sister-in-law in every way you can=)

     
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